Anyone have experience with FPIES?

[GAGirlInVA]

Our son has been diagnosed with FPIES (Food Protein Intolerance Enterocolitis Syndrome), between our allergist and our gastro. But honestly we feel like they are floundering a bit. Admittedly, our gastro and allergist are caught in a power struggle, even though our gastro is the one that referred us to this particular allergist.

He's been taken off of all tablefood and has been put on elemental formula (broken down into amino acids.) He's not continuously stayed at the amount of formula they would like for him to drink, so we were advised to alternate the flavors to try to get him to drink more.

And then he had a reaction to one of them.

So we obviously discontinued the new flavor. But it just feels like we don't have much of a game plan. We have an appointment on Wednesday to followup.

I mean he's 2.5 and on nothing but formula!

Another friend with a child with gastro issues is really pushing me to have him seen by one of the big three: Cincinnati Children's, Boston Children's or Children's Hospital of Philadelphia. I requested an appointment at Boston Children's but I know it could be months before we get in.

I was hoping that since the Disboards are so large that I could maybe find another parent that has been through this...

 

[kirbydog48]

No great advice, just wanted to say this must be really challenging. I just had to read about it; sounds like dairy and soy are the big culprits. I live in MA, so of course I'm partial to Children's in Boston, but Philadelphia is great too. Maybe finding a pediatric nutritionist may help? Hopefully he'll outgrow it soon, although so many kids now have food sensitivities and adults too, and it can take forever to figure out what the problem is.

 

[GAGirlInVA]

No great advice, just wanted to say this must be really challenging. I just had to read about it; sounds like dairy and soy are the big culprits. I live in MA, so of course I'm partial to Children's in Boston, but Philadelphia is great too. Maybe finding a pediatric nutritionist may help? Hopefully he'll outgrow it soon, although so many kids now have food sensitivities and adults too, and it can take forever to figure out what the problem is.

Yes, before we went to the allergist we had already identified milk, soy and egg being an issue. But there was something else (or multiple something elses) in his diet still causing chronic diarrhea.

It is very frustrating. Very, very.

 

[AverageDiser]

You didn't mention where your son is being seen now, but you may want to check out UVa Children's if you haven't. My daughter is seen there for a couple unrelated issues, and we've always been very happy with the quality of care. Just thinking it's prob closer for you. HTH.

 

[frequency]

My brother had an issue very similar to this years ago. Of course the treatments are different now, but he ended up at John Hopkins for treatment. Is he growing? It sounds like if they have him limited that much its more than the standard allergic to soy proteins stuff.

 

[NYEmomma]

Hmm, I have a friend whose son has PKU and from what I understand, it has to do with protein. But it's far more serious than chronic diarrhea. What about one of the Cleveland hospitals?? I know they're pretty outstanding.

 

[shinysparklybubbles]

No advice but for you. I can't imagine how frustrating it must be. Check out this website http://www.kidswithfoodallergies.org/
I like the forums (my son is peanut/treenut allergic). Have you posted this on the disability board?

Good luck! If you end up coming up to CHOP send me a message! My son goes there for his food allergies.

 

[GAGirlInVA]

You didn't mention where your son is being seen now, but you may want to check out UVa Children's if you haven't. My daughter is seen there for a couple unrelated issues, and we've always been very happy with the quality of care. Just thinking it's prob closer for you. HTH.

I can't find any other parents that have seen doctors familiar with FPIES and have gone to UVA. Unfortunately, part of the problems is doctors just not being familiar with it. We are actually outside of Richmond.

My brother had an issue very similar to this years ago. Of course the treatments are different now, but he ended up at John Hopkins for treatment. Is he growing? It sounds like if they have him limited that much its more than the standard allergic to soy proteins stuff.

He has had chronic diarrhea for 2 years. At first we were told that it was toddler diarrhea and since he was still growing it was not concerning. But he has now stopped growing and is vitamin D deficient so we were sent to the gastro with a diagnosis of malabsorption. The gastro did some tests and an endoscopy and sent us to the allergist. We actually have figured out that so far he has issues with milk, egg and soy... but he was still having issues and we never got down to exactly what that was. His allergist believes his most recent reaction was to Citric Acid used to the flavor the formula he tried. Our allergist cannot tell us if he will ever be able to eat enough table food to be able to leave formula behind completely. Unfortunately, from the blogs I've read, lots of kiddos only have a handful of foods that they can actually eat and are safe.

Hmm, I have a friend whose son has PKU and from what I understand, it has to do with protein. But it's far more serious than chronic diarrhea. What about one of the Cleveland hospitals?? I know they're pretty outstanding.

I don't know about hospitals in Cleveland. Adding it to my list of things to research. Thanks. While chronic diarrhea doesn't sound so bad, it can actually cause a child with FPIES to go into shock. Thank God we've never gotten to that point.

No advice but for you. I can't imagine how frustrating it must be. Check out this website http://www.kidswithfoodallergies.org/
I like the forums (my son is peanut/treenut allergic). Have you posted this on the disability board?

Good luck! If you end up coming up to CHOP send me a message! My son goes there for his food allergies.

I have been to that site but hadn't found the forums. Thank you!

 

[shinysparklybubbles]

I have been to that site but hadn't found the forums. Thank you!

I think you have to register to have access.